Almost two years passed before I managed to save the money and return to Ecuador last September. I was trying to follow-up on Doña Carmen, an Ecuadorian woman who had been HIV-positive for 10 years with no symptoms. Her five-year-old daughter had died of AIDS, there being no medicine or treatment available. I met Doña Carmen while she was caring for another HIV-positive woman, Doña Teresa. Doña Teresa had died of HIV complications one month before I had last returned to Ecuador.
Expensive, intermittent access to HIV meds, no government or social support and shame will do that to infected women in less technologically developed countries.
Doña Teresa left two daughters in the care of Doña Carmen. No one else, it seemed, wanted to be bothered with anyone with HIV. It was left to the small, personal, shared caring of those individuals living quietly and socially isolated by having the virus. I simply could not imagine that Doña Teresa had had her children tested for HIV. To have children tested for the virus in this very conservative country first meant having the economic means to do so, and secondly, even more significantly, having to disclose that you yourself had the virus, and risk severe social ridicule and ostracism.
Too, too hard.
I was, then, hoping to see how Doña Carmen was faring. I work with HIV-positive individuals in the U.S., and wanted to see how a woman with HIV and no symptoms (thank goodness, for the only medicines available on a half-assed, arbitrary basis is AZT, which given alone was long ago considered sub-standard in this country) could continue to not progress to AIDS with no antiretroviral medications, be alive, well, and healthy after having HIV for so long.
I wanted to hold on to that sliver of hope that Doña Carmen had not progressed to AIDS. Especially since there is so little HIV medicine, and few doctors in Ecuador who have knowledge of HIV/AIDS to be able to successfully treat patients. Or the personal or medical will to do so.
In the two years since I left Ecuador, Doña Carmen never responded to my letters. Never told me how she was doing. Never told me how the daughters of my deceased friend Doña Teresa were faring.
The mail system in this Andean nation of some 12 million is, shall we say, sporadic. Some letters and packages get through. Sometimes, lots of times, they don't. Sometimes packages from the U.S. get opened; sometimes letters get read. I wondered if that was the reason that Doña Carmen never responded to my inquiries as to her HIV status. Then, too, how often was it that she went to the post office to mail a letter to anyone in the U.S.? That would be noted, and remembered. I also assumed that she was literate. Perhaps my formal, academic Spanish was hard to comprehend.
I also remembered that Doña Carmen was barely eking out a living as a health educator. No one paid her a consultant fee or an honorarium for coming out publicly about her status. With no extra funds, buying a pen, paper, envelope and a stamp would be a frivolous luxury. Not to mention the cost of getting on a bus to go to the nearest post office to mail the letter.
Which is why I decided to travel back to Ecuador, to see with my own eyes how my friend was doing.
She was not available. In the two weeks I was in Ecuador, I tried contacting everyone I knew who knew her. My former Peace Corps program manager had not heard about Doña Carmen in almost a year. Another person, a wealthy and well-connected German woman who had lived in Ecuador for more than two decades and had been giving money to Doña Carmen to care for my deceased friend's two daughters, was in Germany while I was in Ecuador.
I gave it my last shot. I took the eight-hour bus trip from the nation's capital, Quito, to Guayaquil, the second largest city in the country, where Doña Carmen lived on the outskirts, to see if I could find her or someone who knew her.
Doña María was a professional woman employed by a nationally recognized family planning and health agency in Ecuador, and knew Doña Carmen. She had invited her to come and speak at "talleres" (workshops) on reproductive health and sexually transmitted diseases. Doña María said that she had not heard from Doña Carmen in more than a year. The last she had heard, Doña Carmen had gotten tired of being asked to disclose her status by public health agencies. While Doña Carmen was publicly applauded and much admired and supported for going public about her HIV status, and of the death of her daughter from AIDS, afterward she was reviled, humiliated and made the subject of much negative gossip.
So Doña Carmen went into hiding. She was unavailable due to her HIV status. She tired of being the only public HIV-positive woman in the entire country of Ecuador! I could imagine what a cumbersome, negative burden that would quickly become. Somewhere in Guayaquil, along with the daughters of my deceased friend, Doña Carmen was living a quiet life. I hoped.
I left Ecuador one day later. In my thoughts and spirit, I sent Doña Carmen and the daughters of Doña Teresa all my long-distance support, compassion and prayers. It was all I could do. They could use that. And so much more.
Corella Payne, M.Ed., M.P.H., is a returned Peace Corps volunteer (1991-1995). She works with HIV-positive women, dedicating herself to serving the African American community through South Side Help Center in Chicago.